Loving Lucas - The Journey of Our Little Man with Down Syndrome

  Hello Family and Friends, 3/27/24 Lucas is going home! Today marks the 2 week mark from when I gave birth to him, it's hard to believe! I've been in a lot of talks with the pediatricians on staff here and he can go home tomorrow!  He is being discharged with an oxygen tube and a feeding tube. I had a chance to talk with the cardiologist late yesterday and he let me know that the reason Lucas needs the oxygen tube (which is keeping his oxygen saturation up) could be from either his down syndrome or his heart defects. It's hard to know exactly which is having him need the oxygen support, but he is hopeful and thinks it likely that in a few months he will grow big enough that he won't need the oxygen support through the nasal canula any more. But as always, we'll just take one day, one step at a time and see what this journey looks like with Lucas as he shows us what he can do! The feeding tube he will definitely grow out of. We've been tracking how much he's...

LUCAS' PROGRESS Hello Family and Friends, Rounding into another week. Things are looking so great in general. Our man just needs to get a little bit stronger. Now that we both have a whole week under our belts in healing and adjusting, I think we're in much better shape! Here are the updates from the 2nd week in the NICU and very likely the last week! Thursday 3/21 (DAY 9 in NICU) Weight: 5lbs 15.9oz - gained 15 grams Being Fed 130-40  Mls/kg/day Temperature Support - None Breathing Support - Minimal Feeding Support - in a habit of nursing and also through feeding tube. the nurses give him a bottle when I'm not there for a feeding so he's getting lots of practice! They removed temperature support today at 5am! Lucas hasn't needed temperature support all day so that is looking good! He's been tolerating increased milk consumption so they are going to increase by 10 mls in the morning and try 10 more mls for his evening feeds to see if we can get him up to 140mls ...

Hello Family and Friends, I thought I would keep an update once a day of the progress of our little man as he gains experience (as if he was in a video game) and eventually levels up so he can join us at home. 🙂 Just for instance, we are expecting that he stay in the NICU this week. I get to stay with him 24/7 while Fernando and his parents are taking care of the girls at home. Saturday 3/16 (DAY 4 in NICU) - Currently, this is the support he is receiving: - Oxygen : he's being given a very low amount of supplemental oxygen which is a  nasal cannula (tube)  run across the bottom of his nose. - feeding tube : he has a feeding tube in where he can be given milk if he doesn't finish his bottle. He has a few aspects to his overall health that relate to his energy. The cardiologist mentioned that he might get tired out when trying to eat or move around because his heart will beat faster and the blood in his heart will mix and result in tiring him out. Lucas was eating a bottle wel...

 Hello Family and Friends, I’m writing to you from the hospital. Finally getting a chance to wrap my head around everything that’s happened! The team here at UW Medical Center has been incredible and we’re so grateful. So you know that Lucas was born, and how else are we doing?? :) So I had a c-section and was discharged this afternoon so I am staying in his room with him. It’s just comfortable enough for me to hang out with him and be able to sleep in his room and be close. I’ve been pumping so he’s only eaten my milk which gives me a lot of peace of mind he’s getting good nutrition. I feel good and am recovering well I think. I haven’t had a c-section before, but the entire procedure went very smoothly and I rested a lot that last few days. Now I’m walking around pretty confidently and still resting, but it feels nice to not be hooked up to anything and feel more normal. As far as Lucas, he is strong for being born early. He handled the birth really well, he was whisked away to b...

3/13/24 @ 1:30pm Hey Guys, Things just got exciting real fast. I went in for a check for Lucas this morning and although his heart beat is strong, they wanted to see him moving around more and my fluid dropped to 2.5 from 3.7 on Monday.  I received directions to get to UW Labor and Delivery which is where I am now and they just finished monitoring Lucas and filling me in that they advise doing a c-section in the next hour! So here we go people! I also wrote a blog post early this morning for anyone who wants to read it, cuz I'm writing this on my phone and it'll be hard to delete. I'll send pictures once can! Love you all! Update at 3:55pm Well my phone wouldn't send the email before the c-section so now you get pictures and everything. He was born at 2:27pm. 6lbs 1oz, 18.5 in long. He did very well, doctors say he looks good! 3/13/24 Wednesday @ 4am: Here's a post I'll keep updated as we lead up to Saturday in case anyone dec...

 Week 35 this week and by Thursday I'll be 36 weeks! Hello Family and Friends, Summary: My fluid is low in today's appointments so they scheduled my induction for Saturday 3/16 Detail: This has been an eventful week, after I saw the trend of my fluid decreasing over the previous couple weeks last Monday, I was going into last week worried it would continue to decrease. So On Wednesday, after the reading of 5.4, I felt like I wasn't feeling Lucas move around as much so I went into an office closer to my house in Renton to get checked. They did a non-stress test and also ordered an ultrasound and got a reading of 5.8 for my fluid. This gave me a lot of peace of mind. I also got another non-stress test and ultrasound on Friday which also showed Lucas was moving around a good amount and another reading of 5.8 which gave me hope that the fluid could stay stable through the weekend and perhaps another week to get us to 37 weeks which is the earliest he'll be considered full t...

  Week 34 out of 37 (2.5 weeks to go) Hello Family and Friends, Summary: We have a concern. My amniotic fluid has been decreasing over the last couple weeks and that will be a reason to induce early. I'll be 35 weeks on Thursday so we're definitely in the zone where Lucas has developed a very good amount. Ideally we would like him get to at least week 37, but with my amniotic fluid being on the low side, we'll have to be prepared to get him out for his safety. Detail: I didn't want to overload everyone with e-mails and I had an appointment last Monday, so if you missed that post, I included some fun pictures. :) I had my rounds of test today. Started with an ultrasound, then a non-stress test (which would indicate if Lucas is struggling), then meeting with the OB. The non-stress test came back strong, but my amniotic fluid was 27 2 weeks ago, then 13 last week, then 5.4 this week. They clarified that anything below 5 is considered low, but now we're officially on al...